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This is a post that I would like to hear feedback from professionals in the psychiatric, medical, social-work, pastoral, financial, and elder-law fields about -- this the the post -- "How do you judge whether or not you are doing the best you can, when the Mom you love is so unhappy with her life?" There were many posts from the caregivers in 2012. We are a sad and overstressed group of folks. What do we have to look forward to in 2013 and beyond?

Asked by JoyceW | Mar 25, 2012

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Carol, ordinarily I might accept your premise, but in this case, mil was 18 yrs. younger than fil, so I don't even consider them in the same generation or really her even a part of the "older" generation; I don't really think it was so much that she didn't accept that he was dying; I really think she just didn't want to be around it - I left out the word "home"; I hope that was understood but I really think she just didn't want him at home; I think she was just glad she'd finally gotten him to build her that other room that she'd badgered him to build her so that she had somewhere to be but I do understand that not everybody can handle being in the same room with a dying person. Also, even though I understand what you're saying I still think hospice isn't really being used the way they tout it to be but also, as I'm understanding, when it is - and maybe they're just doing this for that reason - they're not calling it that, but rather palliative care and, yes, in his case, that probably should have been brought in at the beginning, a year sooner; it really did seem like, maybe not her, but some members of the family, they really thought he was going to be made well; I fault these doctors on that but that's also where I think that's where the generational thing comes in; know that later, with my dad, his doc, who I don't fault, because he wasn't brought in till at the end, but that's a long story, but of course that was the same situation with fil; it wasn't like he'd been being treated all along, either - anyway, he'd been trained to bring in hospice/palliative care sooner. But not sure what you mean by the ones you're talking about not being able - personally, or not allowed to - to be with their spouses during their last days. Could you explain that?
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Hi debdaughter,
Sometimes spouses live in denial because it's too painful to accept the reality that their life partner is dying. Also, the older generation didn't have access to hospice care and many had/have a misunderstanding about what hospice does now that it is available. I experienceed what you are describing with two elders (not my parents) who couldn't be with their spouses during the last days. I try not to judge that. It's part of their history, their pain and their denial. Sometimes what you are describing is lack of love, but in the cases I witnessed it was more fear and denial.

Take care of yourself. You sound like a kind, loving person who - like all of us - is just trying to figure out these mysteries.
Carol
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It hurts me to hear my mil talk about how much she loved my fil when she, too, would not stay with him at the hospital or even in the same room with him when they sent him on hospice which I don't think she even wanted done, not certain she even believed, or at least wanted him on it, that he was dying, or maybe just didn't want him dying there
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I'm sorry, I sure did not mean to imply that caregivers should lower expectations so that they have to do more and work harder! I meant that when we expect people to be reasonable as they age and lose judgement faculties, on top of whatever personality traits and tendencies they had before, we're going to be disappointed and stressed on top of being angry, and can end up feeling bad about feeling that way. My mom developed her own myths about how things had been in her marriage that soothed her guilt - both false and true - some of them hurt my heart, but I knew it was not any use to keep arguing. "We could both be so much happier if only..." finally gave way to the reality that Mom was doing and thinkng as Mom saw fit, and once my best efforts to change any more of it were futile, I could see we just had to settle for what we could get under the circumstances. It made it easier for me to set reasonable limits on what I would and would not be able to do, and to accept on an emotional level that I was trying to make lemonade out of some very dry lemons and was not going to get very much.

You are most decidedly NOT an awful person and venting as well as problem solving is one of the major things these forums are about.
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OnlyoneHolly,

I totally hear you!! I'm an only child taking care of my elder mother right now and I'm about ready to snap. All she does is talk about how unhappy she is but she won't do anything about it-- she expects me to somehow fix it for her. She refuses to go anywhere on her own/without me, won't drive even though she's perfectly capable and has her own car, and continually complains. Physically she's healthy but she's always had a mental illness that has made her irrational. My stepfather used to bear the brunt of her issues (they were together 24/7 for 20 years until he passed) but now that he's gone, its up to me. I can't be with her all the time and act like her social director, I have a career but the stress of the past year with her is starting to taking its toll there too.

What bothers me about the original "expert" answer is that it assumes so much-- that the relationship between the elder and caregiver is based on mutual love and trust, that the elder was ever in a position to care for another person, etc. I've been caregiving my mother since I was 5, having to raise myself and take care of her until my stepfather came around. He wasn't the nicest person but at least he took that responsibility off my shoulders. When he was ill, she couldn't/wouldn't drive him to the doctors or even get in the ambulance when things got bad. She just called me and waited the 2-3 hours it took for me to drive down there. And yet, to hear her tell it, she was a saint. (Sound familiar?)

Even venting like this, writing it all down like this, I feel like an awful person. But you're right, a person's got to vent or they'll lose their mind completely.
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My elder is fearful of the outside (agoraphobic?) and even if she says she "longs for" socialization she will freeze up and has anxiety attacks. She is already taking Xanax, will drink alcohol if she can get her hands on it, and is not following the doc's suggestion/prescription to take Paxil. Her vision is greatly reduced. Reading is difficult, watching tv is tolerable. Offers to get vision assists from the agencies on Blindness, and the Senior Care agency are met with weak enthusiasm. Body strength is dimished, but she will not exercise unless there is a one-on-one person (who she likes) who "walks her through" it. I know a lot of the afflictions of aging "suck," but I cannot be her slave, her maid, her mommy - 24/7. Ok, so "lower expectations" on my part, but why do elders not accept that they have to lower expectations too? FYI -- my elder "took care" of her widowed parent w/ the help of siblings (a lot of help) and she thought she was doing her duty by taking her mom shopping or out to lunch. Her parent passed away of a heart attack and had been in fairly robust health and capability up until that point. No long, drawn out years of watching a parent be miserable, abusive, and wondering what the next issue would be. She had it easy. I was the main caregiver too, in the times her spouse was ill before he passed away. She didn't even go to the hospital to sit with him when he was in the last of his illness. She thinks she's been a saint -- it's all in her head. Pathetic! Sorry to vent but need to. Thank you all for listening.
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I think its true - aging can really suck, and the best you can do is treat anything treatable and, sad as it may seem, lower your expectations. At some point you may have to realize that the best you may do is to find little bits of pleasure in some activity you can still engage in, however modified it may have to be!
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Hi Joyce,
I don't fit into the categories you listed, but I'll start out with what I used as a touchpoint during my two decades of elder care.
I knew what my parents had done to care for their parents. Therefore, when I was in doubt, I felt that their guidelines for taking care of the parents they loved can help me make judgements as well.
I asked for help and researched materials on any specific disease my elders had. Where there were disease specific sites, such as Alzheimer's, diabetes, etc. I suggest communicating with the experts on those sites and asking for feed back. They can give you a realistic view of what you can expect to accomplish.
Communicate often with your mother's health care providers. She may be depressed and an antidepressant could help. She may have pain that could be better controlled. She may need more peer socialization, which adult day care and other group efforts can provide.
I tried to keep my elders supplied with music they enjoyed and other activities, brought them food that they especially liked, spent time with them and included them in my life when possible.
Were they always happy? No. They had physical pain. They regularly heard news about life-long friends either developing diseases or dying, They struggled with the issues of losing control of their lives. Aging is tough and not everyone handles it well. I did everything I could while still remaining somewhat sane myself, and then I had to accept the fact that I couldn't make anyone happy.
I hope you hear from the experts you listed, Meanwhile, the very fact that you care this much signals to me that you are an excellent caregiver. Try to get some time for yourself, too.
Carol
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